May is EDS Awareness Month

EDS/HSD — Ehler’s-Danlo’s Syndrome and Hypermobility Spectrum Disorder

EDS and HSD are a group of inherited connective tissue disorders, characterized by joint and tissue hypermobility among other traits. There are 13 subtypes of EDS, most of which are rare, the most common being hEDS or Hypermobility EDS. Typical symptoms associated with EDS/HSD:

• loose, unstable joints that dislocate easily

• joint pain and clicking joints

• extreme tiredness (fatigue)

• skin that bruises easily

• digestive problems, such as heartburn and constipation

• dizziness and an increased heart rate after standing up

• problems with internal organs, such as mitral valve problems or organ prolapse

• problems with bladder control (urinary incontinence)

Genetic cause(s) of hEDS have not yet been identified, so there is no genetic testing for hEDS. Patients will be given a diagnosis by their physician of hEDS if they meet certain diagnostic criteria. This includes testing for general joint hypermobility through the Beighton Index and identifying two or more features that may include examples such as skin hyper-extensibility, positive family history, chronic pain in multiple joints and recurrent joint dislocations. Even without a diagnosis of hEDS, a patient may still be categorized as HSD or hypermobility spectrum disorder.

There is no specific treatment for EDS/HSD, but symptoms can be managed through treatments such as physical therapy.

Resources and education on these conditions can be found here at the Ehlers-Danlos Society.